Hello, I am new and have been very confused lately. I thought I would reach out for support and maybe get some questions answered. I know it may be long but please stay with me here.
I guess I had my first attack in Feb. It started out with just a tingle in my left thigh, I kept thinking it was my phone vibrating but it was not. I do not have any insurance so it took me about 3 months to see a Dr. by this time I started having tingling in my feet and legs and when I looked down it was like a tingling sensation down my spine. I can't remember if I had problems with my arms then or not. My Dr. told me it was neuropathy and put me on Gabapentin. He told me if it does not get any better in about 3 months then I should see a neurologist.
I finally saw a Neuro in Sep. She did the initial testing and said it was definitively not neuropathy. She told me she wanted me to do an MRI of my spine. I did the MRI and they found 3 lesions. At this point she said probable MS. She recommended a Spinal Tap which I did and the blood tests. The results were all normal except my IGG index was slightly high. I don't even know what that means. It also said there are possible very faint oligoclonal banding pattern.
So here I am now, she told me she was classifying it as CIS at this point and wants me to get a Brain MRI. She told me what I had in Feb was probably my first attack and what I am experiencing now is the side affects from it. She wants me to start on meds, I think copaxene, I am also OCD and have extreme anxiety about any kind of medication but I feel if I don't everything may get worse. I am in a state of confusion about this and almost in tears just writing this. I don't like having a pity party for one and I feel that's just what I have been doing lately. I am so angry this is happening and have no definite answers. She basically said my symptoms may get better or they may not. I am also still on Gapapentin which does help a little.
Symptoms: I have tingling numbness in my feet, which is hit and miss. Some days its there and some days its not. Numbness in my legs which I think I have gotten used to. Some days my legs feel so heavy, I don't like to walk or it takes a lot to. My finger tips are numb. I have funny sensation in my fingers like something is there when its not. I still have the funny sensation in my spin sometimes when I move a certain way. I have other things too that I don't know if they are related or not. Also, I have balance issues, cognition issues and I am extremely fatigued most days, even after a good nights sleep. Makes it hard to live a normal life and go to school and work. My mind is in overdrive right now.
I just wanted to be able to get my story out and whats happening to me. As most probably know its hard to talk about this with people, at least for me anyways.
I do have some Questions and concerns. What are some coping strategies anybody has used? Am I making this a bigger deal then what it really is? If I also have brain lesions does that increase my chance to have MS? What are the chances and how long does it take to go from CIS to MS? I keep finding conflicting reports. Has anybody on here tried dating and what was the experience once they were told about your MS or CIS?
I am not married nor do I have children and I'm 27 and am scared of dating. Not only do I have this going on but I have OCD as well. I feel like that is just a double whamming. If I do have kids someday, what are the chances of them having the same thing? I feel like I am worrying about a million and one things and cannot slow down. I know some of the worries are probably silly but I still can't help but worry. I know some questions cannot be answered but just being able to express them helps. I ask my Neuro a million questions but also seem to think of more after I leave.
Thank you so much for reading this. I know a lot have it worse. This is just too knew to me still.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I guess I had my first attack in Feb. It started out with just a tingle in my left thigh, I kept thinking it was my phone vibrating but it was not. I do not have any insurance so it took me about 3 months to see a Dr. by this time I started having tingling in my feet and legs and when I looked down it was like a tingling sensation down my spine. I can't remember if I had problems with my arms then or not. My Dr. told me it was neuropathy and put me on Gabapentin. He told me if it does not get any better in about 3 months then I should see a neurologist.
I finally saw a Neuro in Sep. She did the initial testing and said it was definitively not neuropathy. She told me she wanted me to do an MRI of my spine. I did the MRI and they found 3 lesions. At this point she said probable MS. She recommended a Spinal Tap which I did and the blood tests. The results were all normal except my IGG index was slightly high. I don't even know what that means. It also said there are possible very faint oligoclonal banding pattern.
So here I am now, she told me she was classifying it as CIS at this point and wants me to get a Brain MRI. She told me what I had in Feb was probably my first attack and what I am experiencing now is the side affects from it. She wants me to start on meds, I think copaxene, I am also OCD and have extreme anxiety about any kind of medication but I feel if I don't everything may get worse. I am in a state of confusion about this and almost in tears just writing this. I don't like having a pity party for one and I feel that's just what I have been doing lately. I am so angry this is happening and have no definite answers. She basically said my symptoms may get better or they may not. I am also still on Gapapentin which does help a little.
Symptoms: I have tingling numbness in my feet, which is hit and miss. Some days its there and some days its not. Numbness in my legs which I think I have gotten used to. Some days my legs feel so heavy, I don't like to walk or it takes a lot to. My finger tips are numb. I have funny sensation in my fingers like something is there when its not. I still have the funny sensation in my spin sometimes when I move a certain way. I have other things too that I don't know if they are related or not. Also, I have balance issues, cognition issues and I am extremely fatigued most days, even after a good nights sleep. Makes it hard to live a normal life and go to school and work. My mind is in overdrive right now.
I just wanted to be able to get my story out and whats happening to me. As most probably know its hard to talk about this with people, at least for me anyways.
I do have some Questions and concerns. What are some coping strategies anybody has used? Am I making this a bigger deal then what it really is? If I also have brain lesions does that increase my chance to have MS? What are the chances and how long does it take to go from CIS to MS? I keep finding conflicting reports. Has anybody on here tried dating and what was the experience once they were told about your MS or CIS?
I am not married nor do I have children and I'm 27 and am scared of dating. Not only do I have this going on but I have OCD as well. I feel like that is just a double whamming. If I do have kids someday, what are the chances of them having the same thing? I feel like I am worrying about a million and one things and cannot slow down. I know some of the worries are probably silly but I still can't help but worry. I know some questions cannot be answered but just being able to express them helps. I ask my Neuro a million questions but also seem to think of more after I leave.
Thank you so much for reading this. I know a lot have it worse. This is just too knew to me still.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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